Kevin Kelty ALS Research Fund

Thank you for visiting our research fundraising site and considering a donation to help find a cure or at least a treatment for ALS (amyotrophic lateral sclerosis).

Let me tell you a little about my story. I had some twitches in my leg muscles in 2008, but several doctors and specialists in Dallas told me it was nothing to worry about. I have always exercised, watched what I ate, had annual physicals, and all the tests they ran showed I was very healthy. So, I went on with my life, took a new job and moved from Dallas to Baton Rouge, La. Fast forwarding to August of 2009, I started limping for no good reason. I went to several more doctors over the coming months and in October of 2009; I finally ended up on the doorsteps of Dr. Stanley Appel in Houston. Dr. Appel, per the Muscular Dystrophy Association, has seen more ALS patients than any other doctor in the U.S. and is one of the primary specialists in this disease in the world. After two and half days of medical tests, it was determined that I had upper and lower motor neurons issues, all other potential causes were eliminated and the diagnosis of ALS was delivered.

ALS basically causes the motor neurons that tell the muscles to move to die off. ALS is a rapidly progressive disease with no cure or treatment plan. Roughly 50% of people die within 2 years of diagnosis and 90% within 6 years. The disease eventually leads to paralysis of the entire body but cognitive skills are not impaired. It is considered an orphan disease in that only 30,000 people in the U.S. (.01%) have it and thus it does not receive the research funds of diseases that impact a greater percentage of the population. It is also called Lou Gehrig's disease after the famous New York Yankees baseball player who died of the disease back in the 1940’s.

So this was a tough diagnosis to receive. I continued working at JPMorgan Chase for another year, but at the end of 2010 had to go on disability leave as my walking was becoming unstable and my voice was weakening. I did an experimental drug trail run by Dr. Appel for a year but unfortunately, like all other treatments tried over the last 150 years, the drug did not work. Now in the summer of 2011, I am in a wheelchair, my voice is going rapidly, my breathing is compromised, and the disease has spread to my hands and other parts of my body. But, there has to be hope! Medical science is making tremendous progress in other areas, and the Northwestern University study released in August of 2011 gives ALS patients that first glimmer of hope! As Dr. Appel told a Congressional hearing “ALS is not an incurable disease, it is an underfunded one”. It is why we have launched this research fund and how you can play a role in truly making a difference.

Our research fund is devoted to ALS Therapy Development Institute (ALS TDI). ALS TDI was founded in Cambridge, MA in 1999 and has over 30 scientists solely devoted to ALS research. As a 501(c) (3) nonprofit organization, it was the tagged as the world’s first nonprofit biotechnology company (and yes, your contributions will be tax deductible). Being a nonprofit, they collaborate actively with other leading researchers in academia and industry as well as with the Muscular Dystrophy Association. My doctor, Dr. Appel, serves on the board of directors overseeing ALS TDI. I think ALS TDI can be an important contributor to finding a cure or at least a treatment for ALS and can perhaps do it in a quicker fashion given that they specialize in just ALS research.

Thank you for helping us in this effort and in making a real difference!

Name of charity: ALS Therapy Development Foundation
Address: 300 Technology Square Ste. 400, Cambridge, MA 02139
Phone #: 617.441.7200 
Name of contact: Amy Tompkins
Tax ID # 04 3462719

Page {{currentActivityPage}} of {{totalActivityPages}}